Rachel Jones
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rj4real.bsky.social
Rachel Jones
@rj4real.bsky.social
Staying ready so I don't have to get ready. All about supporting journalists, laughter, and making a contribution to this world. Oh, and mastering new recipes.
Brazilian businessman Fernando Goldsztein created The Medulloblastoma initiative to speed up the journey toward brain cancer treatment for children like his son Frederico.

Helping journalists breathe context into complex issues is how @nationalpress.bsky.social makes good journalists better.
November 18, 2025 at 9:31 PM
Nation Media Group investigative health + science journalist Mercy Chelangat wrote a powerful feature about Langat's family. She offered solid advice about preparing for interviews, identifying researchers and authentically connecting with rare disease patients and families
November 18, 2025 at 9:27 PM
Ahrens-Nicklas and Musunuru are the scientific team behind the historic personalized CRISPR-based gene-editing therapy that saved the life of Baby K.J. Muldoon. @upenn.edu @childrensphila.bsky.social
youtube.com/watch?v=mUQW...
#globalhealth
#rarediseases
#innovation
#rarebutnotalone
A Breakthrough in Medicine: Personalized Gene Editing to Save KJ
YouTube video by The Children's Hospital of Philadelphia
youtube.com
November 17, 2025 at 8:14 PM
The @nationalpress.bsky.social Rare Disease fellows hail from 5 continents, + they'll hear a range of conversations about equity + access in the rare disease realm. We'll also highlight some of the incredible biotech advances that have improved the lives of some people living with rare disease.
November 13, 2025 at 8:55 PM